Normal...

The dysautonomia blogs I have liked best have all just ... ended.  Mid-story.  I get that now.  Writing has become so very, very arduous.  I have been a writer all my life.  From the time I was a young girl, writing is how I make sense of the world ... how I make sense of my world.  And yet that which has always come as easy as breathing to me has now become my Sisyphus challenge.  Really, though, each day of living has become the curse of Sisyphus.

I found this meme on one of the two Chronic Illness encouragement pages on Facebook.  It is one of those things that resonates deeply within, reverberating to a sense of wholeness of being.  Yes!  This is true!!

This is one of those things that I do not think you can understand unless you are in that situation.  I mean, you might be able to empathize with me somewhat on some sort of level, but you will not understand until you are walking in the rather uncomfortable shoes of chronic illness.  It is like that lovely, heartbreaking article about being in the Dead Dad's Club.  You won't understand it until you are a member.

I've written before about living in the In-Between Moments.  Living well when I am not so ill that I have no space for anything else.  For, really, in those bad moments, all I can do is endure.  I still long to be able to think more rationally or hopefully during those times, but I do not.  I am frightened and lonely and overwhelmed.  That is all I can be.

I am working on learning to stop punishing myself for that.

It's been a bit of a journey, but my haven project is complete.  By that I mean the foundation is there.  Firewood Man still needs to build a frame for the tulip stained glass window.  I still need to figure out the making of a fountain for beneath the window (in the front right over by the flower bed).  And I need to decide about having a fire pit.  If I do, then I'd move the table and the bench back where they were in the previous photo.  I am conflicted, but that is okay since all those things mean more money.

Whilst I did not plan the timing, Firewood Man ended up re-doing the sidewalk not with concrete as was the plan, but with pavers.  Then, he made walking paths on both sides of the garage.  [I'm hoping the grass seed in the raw dirt beneath the straw will eventually grow.]

I paid a down payment to a painter, but he flaked out on me (walking away with my $125), so Firewood Man also rescued me and finished the task of painting the ancient garage that has had peeling paint all six year's I've own it.  I would proffer the thing most likely has not been painted in at least a few decades.  He and a helper finished all the scraping and primed the garage.  Firewood Man painted most of the first coat, with my helping to finish it.  I painted most of the second coat, with Firewood Man helping to finish it.  I scraped my five basement windows.  He primed and painted both coats on them (because getting up and down was just too much for me).

So, I am broke through 2018.
Seriously broke.

However, I can tell you that the haven—much, much, much lovelier than I ever imagined—has already been what I hoped it would be:  a place of peace and rest.  I've half frozen out there, but am looking forward to more pleasant weather.  I know the times will change as the months go on, but right now, the haven is in full sun from noon to four.  That means, in the evening, when it is cool enough for me to be outside this summer, I'll be sitting in shade!  It also means that I will have four hours or so I can enjoy my haven even in cold weather if the sun is shining.  Really, I am rather pleased with how the light has turned out in my haven.

I love being able to no longer see the garbage and recycling bins and to no longer be seen.  I was right in that Amos will notice folk on the other side of the fence, like when the neighbors across the alley are taking out their garbage, but he no longer goes nuts.  And, of course, there's no longer any dirt for him to kick up all over himself whilst he's going nuts.  That means a happier Myrtle and a happier Amos.

The wood in the panels shrunk more than Firewood Man anticipated, so you can see a bit between them if you are staring at the cracks, but I don't care.  The whole space is just LOVELY!  The wind chimes I hung are not really big enough, but I have some of nature's music for the time being.

I love the privacy.
I love the quiet.
I love the outdoor space.

My computer picks up the wi-fi in my house (though my phone doesn't), so I can stream out there.  Today, I received my Mendard's rebate (~$76), so Firewood Man can now buy the supplies to finish off the two outdoor plugs (one for electronics and one for the fountain).  I hope he has time to do so soon.  But I am learning to be the tiniest bit more patient.

Anyway, that's the progress out of doors.  And it is, I hope, moving me to my goal of finishing off all the repair, maintenance, and upgrades on this old house.  The four small windows in the attic at the front of the house are just as peeling as the garage was.  They open inward, so I am hopeful that when it is a bit warmer, consistently so, I can take care of that painting myself.  The screen door to the basement outdoor entrance is in dire need of scraping and  peeling.  I asked Tim if he would scrape that and then I would prime and paint.  My goal is to have those attic windows and the screen door done by next winter.  As in ... by 2018 all the lingering neglect I inherited when I bought this house will be wiped out.

As for me, I have been thinking what are ways I can ... savor ... more my in-between living.  It might sound silly (and I might have already addressed this), but my 2017 goal is to get more fresh air.  Since moving here, I have been outside more than I have since being diagnosed with MS.  Having a magnificent front porch started that trend.  And then there was the restoration of the airing porch and the opening up of the back porch.  Now, of course, I'll have my shady haven.  What really enables being outside more is that I am on the very edges of the Eastern Time Zone.  So, that means, in the summer, it doesn't get dark until between 9:00 and 10:00 PM.  The heat falls off and I can be outside. The airing porch is not covered, so having that shady spot morning and evening will be a boon to my goal of getting more fresh air.

I do not believe fresh air will heal me.  But I think that it will help me be more positive on some level.  I have no evidence of this save for the fact that when I do get out on the airing porch, I am more ... sanguine.  I am less anxious even if my day has been a great struggle.  Because I have started to notice that fresh air makes a difference and fresh air is free (if you don't count the cost of creating a haven), I thought it was the least I could do and something that I could do.  Hence my freezing out in my haven already!

When I was a young child, my haven was the ocean swell, where the world fell away and I was rocked quietly.  As I've written, I would swim out past all the wave and ride the current as far as down the beach as my fearful little mind could stand.  Then, I'd swim back in, walk in a different kind of silence back to where my family was, try to double that distance walking past them, then swim out and ride the current in the cradle of the ocean swell.

When I was a teen, my haven was the roof of my house.  I found a way to climb up there and it was my safe space, my place of privacy and quiet.  I would haul up a book and a drink and lie back on the slope of the roof to lose myself in whatever tale lay in my hands.

My world has been without a haven for too long.  And my illnesses, with their sensitivity to heat and temperature dysregulation, have isolated me more than even my introverted self would normally be.  And it has increasingly been filled with loneliness.  Sometimes, I think, "Oh Myrtle, you're just justifying the expense!  This is a want, not a need."  But given how much more stillness there has been in my very being since Firewood Man put up that first panel, I know this was right for me.

You know, sitting out at a bistro set on a patio in your yard (Tim refuses to cal it my haven) is a very normal thing to do.  It is an overwhelming, crushing, hopeless realization that you will never feel physically well again, you will never be normal again, be your Healthy Me.  Anything that you find to be a normal endeavor or response or reaction becomes priceless.